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EAPCI Patient Engagement

Patient Initiatives Committee 2020-2022



The ESC/EAPCI Patient Initiative Committee Informed Consent Survey

We are happy to announce the launch of our informed consent survey. Our aim is to investigate variations in practice when consenting patients for invasive cardiac procedures across ESC member countries. Be part of the survey!

Background

Improving patient experience and understanding of catheterisation laboratory-based procedures is a key aim of the EAPCI. The EAPCI Patient Initiatives Committee has been set up with this in mind. Over the coming two years, the current Patient Initiatives Committee will aim to better understand and improve the patient experience of catheterisation-based procedures. In so doing, we aim to design and disseminate information on these procedures and develop tools for a greater patient understanding of how to manage
their heart health. Additionally, we also aim to identify key areas for improvement.

Achievements so far

The 2018-2020 and 2020-2022 worked on a number of collaborative projects, together with the ESC Patient Group, focused on improving patient’s experience and understanding when undergoing percutaneous interventions.

  • A Patient Reported Experience Measurements (PREM) questionnaire was drafted and is now available in ten different languages as the “European Patient Experience in the Catheterisation Laboratory” PATCATH. The aim of this questionnaire is to understand and improve patients' experience while undergoing catheterisation laboratory-based procedures.
  • Additionally, in keeping with the aim of improving patient understanding and engagement, three patient information videos were produced and are now available for viewing explaining:
    • how a diagnostic coronary angiogram is performed
    • what to expect during this procedure
    • Transcatheter Aortic Valve Replacement (TAVR)

Access the resources

Objectives for 2020-2022

Building on the progress made by the 2018-2020 EAPCI Patient Initiative Committee chaired by Dr. Fina Mauri, we will continue to improve patients’ experience and broaden its scope. 

Our aims are:

  • To analyse patient experience in the catheterisation lab using the PATCATH questionnaire and disseminate this information with the aim of identifying areas for improvement.
  • To understand how informed consent is viewed, and obtained, across different European countries.
  • To develop tools to improve patient understanding of procedures and managing their heart health with:
    • a patient information video on Transcatheter Aortic Valve Replacement (TAVR).
    • information leaflets on optimising heart health after percutaneous coronary interventions.
    • collaboration in the development of an app for risk factor management in patients with coronary artery disease.
  • To complete a review of patient-reported outcomes after percutaneous interventions.
  • To design and pilot a patient Reported Outcome Measure tool for use across European countries.

Committee Members

Robert Byrne Chairperson (Ireland)

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Robert A. Byrne is Professor of Cardiovascular Research at RCSI University of Medicine and Health Sciences and Director of Cardiology at Mater Private Hospital, Dublin, Ireland. Prof. Byrne graduated from University College Dublin, Ireland and completed his PhD in Medical Life Science and Technology at the Technical University Munich, Germany. Research awards received include the ESC Atherothrombosis Research Fellowship (2008), the TCT Thomas J. Linnemeier Young Investigator Award (2009) and the Andreas Grüntzig Research Prize of the German Cardiac Society (2016). Leadership roles include Deputy Editor at EuroIntervention and board member of EAPCI and Chair of its Patient Initiatives Committee.

Rasha Al-Lamee Co-Chairperson (UK)

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Dr. Rasha Al-Lamee is an Interventional Cardiology Consultant at Imperial College Healthcare NHS Trust and a Clinical Senior Lecturer at the National Heart and Lung Institute within Imperial College London. She is a clinical trialist with expertise in stable coronary artery disease, coronary intervention, invasive physiology and invasive intravascular imaging.

She leads a research group with a focus on clinical trials that impact the care of patients with cardiovascular disease. She believes in rigorous testing of clinical practice and the use of evidence-based medicine in all aspects of medical care.

She designed, conducted and led ORBITA, the first randomised placebo-controlled trial of coronary angioplasty. ORBITA is one of the most widely cited clinical trials in cardiology of the decade. She is the lead author of the primary publication in The Lancet and the two secondary analyses both published in Circulation.

She is the NIHR CRN North West London Cardiovascular specialty lead and is actively involved in the development and recruitment for a number of multi-centre international clinical trials. She is the patient and public involvement/engagement theme champion for the National Heart and Lung Institute and is committed to patient participation in all aspects of trial design, patient and GP information literature and trial conduct at Imperial College London.

Christopher Rajkumar (UK)

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Christopher Rajkumar is a Medical Research Council Clinical Research Training Fellow at Imperial College London, entering the second year of his PhD supervised by Dr. Rasha Al-Lamee and Prof. Darrel Francis. He is also a clinical cardiology Specialty Registrar at Hammersmith Hospital. His research is centred upon the application of placebo-controlled experimentation to better understand the link between coronary artery stenoses, myocardial ischemia and the symptomatic response to revascularisation. As a member of the EAPCI Patient Initiatives Committee, he hopes to drive innovations which deliver lasting improvements in patient-reported experience and outcomes following cardiac interventions.

Victoria Johnson (Germany)

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Currently, Victoria Johnson is working as a junior doctor in her fifth year of cardiology training at the University Hospital in Giessen, Germany. Her clinical education also includes working in the catheter laboratory. “Addressing patients' interests and concerns is very important for our work, especially for young doctors. Working on this committee gives me the unique experience to improve the communication between patients and doctors and to bring this into my future clinical work.”

Hans-Henrik Tilsted (Denmark)

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He is an Invasive Cardiologist at Rigshospitalet, Copenhagen Denmark. Improving patient outcome and satisfaction in coronary artery disease has been a major goal in his professional career. He has been working with value-based health care at his institution and has been part of a Danish project establishing PROMS in coronary artery disease. He has been part of the EAPCI Patients Initiative Committee since 2018.

Angela McInerney (Spain)

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Angela McInerney is an Irish Cardiology trainee currently completing her interventional Cardiology Fellowship at Hospital Clínico San Carlos, Madrid. As a trainee in Interventional Cardiology, she is committed to improving patient outcomes and feels that better patient understanding and engagement are paramount in achieving this. As a member of the EAPCI Patient Initiatives Committee, she hopes to work closely with other committee members to develop projects that will enhance patient understanding and participation in managing their cardiac health.

Donna Fitzsimons (UK)

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Prof. Donna Fitzsimons is currently Head of the School of Nursing & Midwifery & Member of Senate in Queen's University Belfast, Northern Ireland. She is a past ESC Board Member (2014-2020) where she led Patient Involvement activities and pioneered the establishment of the ESC Patient Forum. She was previously an elected Councillor on the ESC Board 2016-2018 and was Chair of the ESC Council on Cardiovascular Nursing & Allied Professionals (2011-2013). As a member of the Clinical Practice Guidelines Committee, she has lead work on involving patients in Guideline development and review, as well as enhancing nurses' role in Guideline Implementation. Currently, she is working on projects with EAPCI, ACNAP, and Digital Health.
Prof. Fitzsimons' leadership demonstrates her commitment to improving the quality of patient experience and care through education and research. Her research interests in Cardiology include prevention, patient engagement and palliative and supportive care.

Luca Nai Fovino (Italy)

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Luca Nai Fovino is an interventional cardiologist at the University of Padova, Italy. After getting his MD degree at the University of Padova, he completed his training at Columbia University (St.Luke's Roosevelt Hospital - New York) and at the University of Padova as an interventional cardiology fellow, where he also gained his PhD. His main clinical and research interests are in the field of structural heart interventions, particularly transcatheter aortic valve replacement. He is a passionate physician and strives to increase patient awareness of interventional cardiology procedures.

The videos are available in English, German, French, Italian, Spanish.